Background: The CARe Burn Scales are a portfolio of burn-specific PROMs for people affected by burns, including a Child Form (for children < 8 years (Parent-proxy)), a Young Person Form (for young people aged 8 -17 years), an Adult Form, and a Parent... Read More about Testing the responsiveness of and defining MID (minimal important difference) values for the CARe Burn Scales: Patient-reported outcome measures (PROMs) to assess quality of life for children and young people affected by burn injuries, and their parents/caregivers.
Outputs (35)
"I listen to my body now": A qualitative exploration of positive body image in breast cancer survivors (2021)
Journal Article
Objective: Existing research has identified the high prevalence of body image concerns among female breast cancer survivors. However, it has neglected to explore the experience of positive body image among this group, despite its potential utility fo... Read More about "I listen to my body now": A qualitative exploration of positive body image in breast cancer survivors.
“They were aware of who I was as a person”: Patients’ and health professionals’ experiences of using the PEGASUS intervention to facilitate decision-making around breast reconstruction (2021)
Journal Article
Objective: Many women choose to have breast reconstruction after mastectomy, however, decision-making can be difficult and expectations are often unmet. The PEGASUS intervention (Patient Expectations and Goals: Assisting Shared Understanding of Surge... Read More about “They were aware of who I was as a person”: Patients’ and health professionals’ experiences of using the PEGASUS intervention to facilitate decision-making around breast reconstruction.
"Have we done enough?" A cross-condition exploration of the experiences of parents caring for a child with an appearance-affecting condition or injury (2021)
Journal Article
Children and young people (CYP) with appearance-affecting conditions/injuries report common pervasive psychosocial difficulties, regardless of cause, nature or extent of their visible differences. Parents or carers can also experience psychosocial di... Read More about "Have we done enough?" A cross-condition exploration of the experiences of parents caring for a child with an appearance-affecting condition or injury.
The CARe Burn Scale—Adult Form: Translation and linguistic validation into Finnish (2021)
Journal Article
Background: Burn injury can dramatically deteriorate health-related quality of life. Effective burn care may minimize the impact of the burn injury and ensure optimal functional outcome. This requires continuous improvement in burn care and assessmen... Read More about The CARe Burn Scale—Adult Form: Translation and linguistic validation into Finnish.
Physical appearance and well-being in adults with incurable cancer: A thematic analysis (2020)
Journal Article
Objectives: Existing research has established the importance of appearance concerns for individuals with cancer and identified appearance as an important factor in dying with dignity. No research, however, has explored in depth the role of appearance... Read More about Physical appearance and well-being in adults with incurable cancer: A thematic analysis.
The development and validation of the CARe Burn Scale: Child Form: a parent-proxy-reported outcome measure assessing quality of life for children aged 8 years and under living with a burn injury (2020)
Journal Article
Purpose: Patient-reported outcome measures (PROMs) identify patient needs and therapeutic progress. This paper outlines the development and validation of the CARe Burn Scale: Child Form, a parent-proxy-reported outcome measure that assesses quality o... Read More about The development and validation of the CARe Burn Scale: Child Form: a parent-proxy-reported outcome measure assessing quality of life for children aged 8 years and under living with a burn injury.
The effectiveness of interventions to improve psychosocial outcomes in parents of children with appearance-affecting health conditions: A systematic review (2020)
Journal Article
Background: Although many cope well, the impact of supporting a child with an Appearance-Affecting Health Condition (AAHC) can place a significant demand on parents. As such, it is vital that families have access to appropriate psychosocial support t... Read More about The effectiveness of interventions to improve psychosocial outcomes in parents of children with appearance-affecting health conditions: A systematic review.
PEGASUS: the Design of an Intervention to Facilitate Shared Decision-making in Breast Reconstruction (2020)
Journal Article
© 2020, The Author(s). Studies have found varying levels of satisfaction after breast reconstruction surgery with a substantial group of patients reporting some level of regret about their decision. The variable outcomes reported by women undergoing... Read More about PEGASUS: the Design of an Intervention to Facilitate Shared Decision-making in Breast Reconstruction.
Contralateral Prophylactic Mastectomy (CPM) and the clinical consultation: A snapshot of UK healthcare professionals’ views and experiences (2019)
Journal Article
© 2020 Elsevier Ltd Objectives: Increasing numbers of women are undergoing Contralateral Prophylactic Mastectomy (CPM) in the UK. However, professional guidelines suggest CPM does not offer oncological benefit to the majority of women with breast can... Read More about Contralateral Prophylactic Mastectomy (CPM) and the clinical consultation: A snapshot of UK healthcare professionals’ views and experiences.
Women’s initial experiences of their appearance after mastectomy and/or breast reconstruction: A qualitative study (2019)
Journal Article
Objective: Surgical procedures intended to treat breast cancer or reduce risk of developing the disease typically result in changes to appearance and scarring of the breast area, and any donor sites. The longer-term impact of these changes on body i... Read More about Women’s initial experiences of their appearance after mastectomy and/or breast reconstruction: A qualitative study.
“It felt like unfinished business, it feels like that's finished now”: Women's experiences of decision making around contralateral prophylactic mastectomy (CPM) (2019)
Journal Article
© 2019 John Wiley & Sons, Ltd. Objective: Increasing numbers of women in the United Kingdom are choosing to have a contralateral prophylactic mastectomy (CPM) after diagnosis of breast cancer. Whilst research suggests that many experience high rate... Read More about “It felt like unfinished business, it feels like that's finished now”: Women's experiences of decision making around contralateral prophylactic mastectomy (CPM).
The development and validation of the CARe Burn Scale - Adult Form: A Patient Reported Outcome Measure (PROM) to assess quality of life for adults living with a burn injury (2019)
Journal Article
Introduction: Patient Reported Outcome Measures (PROMs) identify vital information about patient needs and therapeutic progress. This paper outlines the development and validation of the CARe Burn Scale - Adult Form: a PROM that assesses quality of... Read More about The development and validation of the CARe Burn Scale - Adult Form: A Patient Reported Outcome Measure (PROM) to assess quality of life for adults living with a burn injury.
First look: A mixed methods study exploring women's initial experiences of their appearance after mastectomy and/or breast reconstruction (2019)
Journal Article
Objectives: Increasing numbers of women are undergoing appearance-altering surgery for the treatment and/or prevention of breast cancer. However, women’s experiences of seeing the results of their breast surgery for the first time, and the support a... Read More about First look: A mixed methods study exploring women's initial experiences of their appearance after mastectomy and/or breast reconstruction.